Posts: 5

Topic: ASCO 2012 - My thoughts

Hello Everyone,We know personally what it means to be part of The Cholangiocarcinoma Foundation. Most of us were looking for a place where we would find critical information about this very strange word and diagnosis. When people find this website - they know they are not alone in this fight. The work of the CCF has connected people around the world. The website is very user friendly. You can find help, see what's working, discuss with others treatments they have or are experiencing, find hospitals who are treating and so much more - you can also get involved to raise awareness. When I attended the first ASCO Meeting 3 years ago - our exhibit was way in the back of the exhibit hall and the questions we received were mostly “what is CC?” or “it is so rare” or “this is too rare a cancer to get noticed”. This year at ASCO 2012, I was totally overcome with so many emotions when physicians, researchers, nurses, other exhibitors and advocates - stopped by our booth and thanked us for what we are doing to raise awareness. So many told us that they give their patients information about the Cholangiocarcinoma Foundation - because “We are the Voice of CC”. Many said that a cancer - that 6 years ago many, doctors included, had a hard time pronouncing the word - now they are aware and they are also aware that there is a need to get involved. Many from other countries wanted to know if we were going to expand to Europe and beyond.

Stella and I attended the ASCO President’s Reception and at the two that I had attended in years past - other advocates sat with us and we all talked about what we were doing. This year - it was so different - a brilliant woman who is a medical oncologist, surgeon and the Director of the Breast Cancer Center at Yale, sat with us - a female GI Oncologist from Indiana University Melvin and Simon Cancer Center sat with us - and a brilliant man who is a biologist and oncologist at Harvard Medical School and Mass. General Hospital (who also received a very notable award at ASCO) also sat with us. They did not just sit with us - they sat and talked with us for a long time - all three were totally interested in talking about the Cholangiocarcinoma Foundation and how it is such a tough disease - but they all agreed that with the CCF raising awareness - things will change - we just have to stay the course. They told us that we are similar to what another rare cancer was many years ago (myeloma) and they have really grown and made great strides in research and treatments, due to raising awareness and their perseverance. This was so exciting - to know that people in the medical field are listening and they are listening thanks to the vision of the founders of the Cholangiocarcinoma Foundation.

On the flight home from Chicago, I tcould not stop thinking about the strides that are being made in cancer research - with the big news of the “cancer bomb” T-DM1 used to treat HER2-positive, a very aggressive and deadly form of breast cancer. The drug is still experimental - so not available yet - but there is hope that it can reach the market within a year. This has the capability of paving the way to other great treatments. There has never been a better time to support and promote awareness of the Cholangiocarcinoma Foundation - we must keep the momentum going. At ASCO it was very evident that the caring, collaborative, and dedicated work of the CCF is getting noticed and I believe it will lead to great discoveries. I was truly honored to represent the Cholangiocarcinoma Foundation at ASCO 2012 and I want to do so much more to help. I know that when I first found the site - I wished I never knew what cholangiocarcinoma was - but I am very proud to be a part of CCF. I will never stop caring and trying to help others who are battling this cancer or who have a loved one that is.Love from NH,Barbara

Re: ASCO 2012 - My thoughts

Thanks for all you do. Without people like you, this site would probably not exist. Bless you and everyone else that helps make up this wonderful site.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: ASCO 2012 - My thoughts

Hi Barbara,

Thank you so much for your post and for all of yours and the others outstanding work that you did at ASCO. Thank you all so very very much indeed! We will get there.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

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